A version of this post by my colleague Amy O'Connor previously appeared on PACE Global.
Patient-centered, patient centricity, patient engagement: no matter what you call it, the concept of putting patient preferences and engagement at the core of health care has been a hot topic at this week’s BIO International Conference. The concept of patient centricity is fairly simple: the Agency for Healthcare Research and Quality defines it as “ a partnership among practitioners, patients, and their families… to ensure that decisions respect patients’ wants, needs, and preferences, and that patients have the education and support they need to make decisions and participate in their own care.”
While we’ve been having conversations about patient centricity for years, as Paul Hastings of OncoMed pointed out, we’re still very much at the infancy of patient focused drug development. As a community, we need to refocus our efforts on making sure we are asking people with cancer the right questions, and incorporating their answers and input into the way we treat and manage cancer. Here are a few of the questions we need to ask patients--and the answers we need to hear in order to make care truly reflects their needs.
What is like to live with your disease?
Patients understand the ins and outs of daily life with their disease better than anyone else. They have unique insights on the risks and benefits of a medicine that can help guide medicine development, and can provide real feedback on how a medicine fits into their life and whether or not it makes them feel better. Chair of the Pancreatic Cancer Action Network, Laurie MacCaskill highlighted the importance of feedback for clinical trials in particular, which can often require travel multiple times a week!
What matters to you?
On an afternoon panel, National Health Council CEO, Marc Boutin reminded the audience that every patient has something they live for. If we can align treatment with their goals, we can better serve those patients and provide them with the most valuable outcomes. Everyone has different wants and needs when it comes to their cancer treatment: some people value higher quality of life over a longer survival time, while others prefer a medicine that they can take in the comfort of their own home over one that requires hospitalization.
It’s been an exciting first couple days at BIO and the conversation’s just getting started. Be sure to check out @PACENetwork for more live coverage from #BIO2015!